Athira Elssa Johnson is tired of the long, whiny messages and sob stories of people isolated for a matter of 14 to 28 days, in light of the coronavirus disease spread. An aspiring journalist from Thrissur in Kerala, Athira has been diagnosed with drug resistant tuberculosis, and has been living more-or-less in isolation for the last two years. “Since I started the medication for drug resistant tuberculosis in 2018, I had not been outside other than for hospital visits for the injections and monitoring of the side-effects from the meds,” Athira wrote in a Facebook post, where she pointed out that many people like her have been in isolation for far too long, and are often neglected or forgotten by others, including the government.
“So these quarantine tips, write-ups on how to kill time in isolation, or how sad physical distancing is – all of this brimming on my timeline angers me,” she said.
Athira was doing her post graduation in Political Science when all of a sudden, life changed and she had to adopt new ways. A mask has been more or less a permanent fixture on her face for many months. Athira would post updates from her hospital days, both about the bad days she’s had and the positive ones. In an earlier post she had to explain why it was important to post about the bad days as well.
When the coronavirus scare began to spread and many people started lamenting about work-from-home situations and the like, Athira wrote again to remind everyone about people like her, whom everyone including the government has forgotten, she said.
“There have always been infectious illnesses and people suffering from it – chronic illnesses and its survivors talking about this. All of this was dancing over your head and only now when there's a deadly virus around and it has spread quite a lot, all are like, ‘Awww, I am sad and lonely I need to stay inside my home doing nothing’. But killer diseases like tuberculosis and drug resistant tuberculosis are swept under the carpet. So many live in isolation for years and die and no one bats an eye,” Athira wrote.
She then went on to write stories of other TB patients she has heard of or witnessed at the TB centre. “In the isolation ward there was another person whose feet looked like the bark of a tree, who is also taking a regimen as mine. I knew his body was in terrible pain, his face was all sunken into his mask, even his eyes fitted into the mask. He was the only breadwinner of his family, a daily wage labourer. His mom said he fulfilled everyone's needs at home, his sisters are married, settled – he made everyone’s life possible and wanted to start his own family. This illness came as a shock to them. I didn't utter a word about dropping my PG course or not being able to have a normal life to the doctor since all of that sounded silly in the isolation ward. We all spent our time staring at the ceiling for hours and cursing our lives for having to take the meds for many more months,” Athira wrote.
She also advised those in isolation or quarantine to educate themselves about the condition of people like herself, on why this is not new for many of them. “When all this mess is over, be a little more concerned about people who are, who have always been in masks, isolated and anxious to get back to life. Why we call out governments for inaction, this is why.”